Well, I am too tired and sore, but Tyler gave us a horrible scare. He was feeling ill as everyone knows. We went to clinic and Dr. G and I were pretty convinced it was viral. Steve suggested a chest x ray but Dr. G said nah. So we went home. Even during the appt he seemed to perk up and seem to stay that way all day. Then that night he stopped breathing, he turned grey and blue and was kicking and flailing his arms. We called Iowa City. Septic shock. It was what I was thinking. I was convinced it was a bacterial infection, even tho there were no fevers... We hooked him up to o2 probe and he was 88, 87, 86, 85 kept getting lower and lower we hooked him to o2 and the doc says go to Monmouth so you dont waste a trip here. Me, knowing there was something wrong said I would rather go to Iowa City. We take the o2 tank and I sit back there holding it to his mouth. He turned blue again, stopped breathing so we take a left and go to Monmouth(very scary local hospitals are not used to these types of cases) where he spiked, had a chest x ray, and screamed I die and I'm done, and between the BMT doc and the Mon er they decided to air lift him to IC. He was not stable. Nothing is worse than seeing your baby's eyes as they wheel him away into an air craft. We had to stand back due to power but even as far away as we were I could still here him crying. I cried. I knew in my heart he would go to bmt get two weeks of antibiotics and be better. Our normal routine. We get to the hospital at 3:30 in the morning and they say he is in the PICU. (peds. intensive care) for those who know about Dylan know there are so many horrible and terrifying memories there for us. We go to the desk and they said Tyler's parents are there they said they cant see him yet. I said what are they doing that we can't see him??? We wait around watch the doctor come out and eat a brownie before walking over to us, (then i hear they cant stay long because we are gonna insert an art line (didn't happen, I refused) as we walk over I see my baby's lifeless little body on a vent ( life support.) For that moment I went back nine years and seen Dylan. It wasn't a flashback it was real. Again. I freaked. I yelled at the doc even threatened a lawyer. Then he said, I'm so sorry, we waited as long as we could. His blood gas was over 718 most times babies stop breathing at 600. He said he was in septic shock and respitory failure. He was dying. He would of had we not put the tube in. I lost it. I lost it. I cried I was so scared. Soon I seen a familiar face. The Nurses asst. that took care of Ty when his line was put in is now a PICU nurse(yes that is how long we have been treated there ) she handed me a kleenex and said do you want to hold his hand? I said yes, I went in and he was lifeless. tubes all over. I cried and told him I was sorry and to be strong and i wasn't givin up and I begged him not to leave me. I got ten minutes sleep that night. I watched as the machine breathed for him. Watched minutes pass and watched him fight fading away.
The next morning the PA , yes, the one I complain about, came in and rushed right over to comfort me and said we'll get him through this, and as much as we have been thru arguing I still believed him. Dr. G came every day he was in the PICU. Made sure we were getting sleep. I truly felt for the first time they care for my son and us. Many BMT nurses visited us to see him.
We took the tube out on Wed. the first thing he said with a hoarse cry he said Dada. We know are in BMT where he as consitantly dropped in o2 and is spiking fevers. He tested positive for hepa flu and we hope antibiotics will help him. His eyes were swollen from an infection to the point you could not see his eyes and now they are bleeding. We are just praying he can get through this.
I better go laundry to do. Hopefully well be home soon and he will be better. Pray for my baby boy Tyty. He is a fighter and has the most beautiful courage. To all three of my boys I miss you and love you.

Momma
- posted by Peg Kay @ 25.3.05

 
Well, the last few days Tyler has taken some steps back suddenly.
He has been verging on a temp, matted eyes, coughing, puking, not smiling, sleeping abnormal amounts of time, Not keepingmeds down. So here I am packing as I see we may be making a trip to Iowa City or staying tomorrow as he usually picks clinic days to pop the full blown temp on us. The older boys are upset because of easter, but we will make do.
It is odd because I was filling their easter eggs earlier this week and it took me back to last year. We were in the Mac House and with everything going on I had forgotten to get their easter baskets and the candy for the eggs. So earlire this week an egg falls open and out falls looney toon fruit snacks. Why? because that is what I found to put in their eggs last year. It was saturday night, no car, and no easter candy for the eggs. I used magazine baskets in the mac house for their baskets and I put fruit snacks I had found in our cabinets to put in their eggs. Now, this year as I am preparing or trying to he is sick and will likely land in the good ole second home of ours... the BMT ward. Which room will we get? Who knows been in all of them at least twice some three times.
It was a bad morning full of puking and coughing and much laundry and I sat the boys down and I said quit screaming and Im not asking you to help me clean up just stop making messes. Next thing I know Brando is washing dishes, folding towels and putting them away catching Ty's puke if I was elsewhere, taking his temp when I was busy. Brando is an amazing kid. He really is. I feel he gets lost in all the SCIDS surrounding our life but this kid is amazingly very adaptable and with such a huge heart keeps us going.
I decided I would write to inform everyone we will probably be up there for awhile depending on how this plays out so I wont have immediate access to email etc. Someone will be here for mail, messages, etc.
I dont know how we will afford this since we are -453.76 as it is. But as usual our only worry is... just let this not be THE ONE that takes him. Let him overcome it.
Steve I know you are sitting on your cloud up there looking down wings in tow, please give us all but especially Tyler the strength to get thru this. You know I am not religous, but if there is an almighty up there tell him Ty isn't ready. he belongs with us.
I have to get packing again.
luv u boys we will get thru this.
momma
- posted by Peg Kay @ 20.3.05

 
My sister just had a baby. So, when people call and ask how Ty is doing what do I say? If I say he is good that isn't the truth. If i say what is wrong they dont want to hear it. They want to be in happy land with the perfect daughter and her perfect healthy children. I would too. So what do I do? Lie and say everything is fine so they dont think I am trying to disturb the happy little vibe going on? Or tell the truth and be told I'm sucking all her happiness away. They didn't feel the need to tell me she had the baby so maybe I shouldn't feel the need to care. But I do.
So what do I do? I'll just ignore everyone. lol Seriously my mom is the only one that calls or cares so it will be easy. I wont answer her she'll get mad then I'll get mad and we'll be fighting. I'll be covered for awhile. lol
Tyler has this weird gunky stuff coming from his eyes. it is so bad it floats on his eyes. I thought pink eye but besides puffiness it isn't real red or blood shot. Guess we'll ask Dr. G Monday. He has been restless and we had to use nasal o2 last night so he isn't all too pleased with me.
The sad part is now he says bad or I'm bad whenever you try to give meds or anything so Bob and I just cry. HE THINKS WE ARE DOING THIS TO HIM BECAUSE HE IS BAD?! *tears* I wish he could understand that if that was the case D and B would have had to take a whole drug store yesterday. lol Seriously tho how awful is that? *tears* I just keep saying you are doing good a little bit more and he will shake his head no. Every time we get done. I say give me five and he will and then I say TyTy one day closer , one day closer. Closer to what? I hope health.
Brandon cut his hair AGAIN! So he is basically bald. The teenage girls love it cuz they stand in the bus line and rub his head. Dylan just wanted me to trim his. I said step up what do you want? he says, not what Brandon has. lol Ok. That is easy. Bob has presented me with a doctor order. I've been so tired lately. I can't even muster energy to do laundry or anything. He says you need to go to the doc. ok. What did he say? Slow down you are exhausted. REALLY? He says can you cut down your daily activity? Hmmm lol he didn't even mention i need to excercise because I am a whale. lol I said this to him, "three kids, one critically ill, immune supressed, weekly trips to IC if not in the hospital with him, hubby working 65 hrs a week. He looked at me and said, no you can't. BINGO. lol I said jokingly. I'll tell you what when I give him his meds I will actually sit down when I do it instead of running by and shooting them in his mouth and hoping I hit the target. lol He said good sense of humor. I siad you have to with three boys. He went into his mom having three boys and it takes a special woman to do that and I said crazy? cuz thats what I am. He laughed. Prescribed many a vitamins and sleeping pills which I cannot and didn't get. Thanked me for making him laugh and I headed back to my world in the bubble. Ahhh safety. Away from the world. It was home. Comfortable again.

As I said I cancelled easter. I feel bad because my mom had glasses and bunny ears for the kids and her. but we are so tired and the germs from a new baby it is dangerous to Ty.I dont really get along with my family with the exception of my mom, my step dad but I never see him. Through all of this nobody has even called just to check to see how Ty is. I let myself feel bad for a moment and then I said, wait, have they even been around for all of this with Ty? no. so why should I waste what little time i have on them? I wont.
Tho it hurts my mom she is still planning on coming up Sunday and she has been real supportive thru all of this. More so than I thought. I thought she would be mad, and telling me what a bad daughter and sister I am, but she has not.
I feel bad enough bout our situation without reminders of how others get to live. My bro and sis are so far different from me and we usually dont talk unless it is a holiday. they pal around and always have as they got into the same circle of friends and are closer in age. I just was the annoying mother like sister. During family gatherings I am just there. Taking up ALOT of space. Thing that bothers me bout this is I doubt once my parents pass I will even have contact with them. To me that is sad.
I tell myself not to feel guilty but I do. i'm a mess inside emotionally. sometimes I wonder if Ty deserves better than me. The PA always says what a difficult and horrible bitch I am and I wonder sometimes if I should be better for him like the other mothers the PA says are so much better than me.
Ty is crying I better go. He hates that nose o2. I may just hold it in front of him so he can sleep.
- posted by Peg Kay @ 18.3.05

 
Tyler is doing pretty well today. He is all over the place and getting into stuff. He does have some weird greenish, yellowish gunk form his eyes. His stools are better so Dr. G was right on. I tried some more therapy. We call it the standing tree, it is basically a child's walking toy. But he just cries, and cries. It hurts so bad.
I'm pretty worn out today. I'm just so tired and I can't get energy to even move about in my day. I'm so tired. I'm missing my Steve pretty bad (not the PA we have now lol get that thought out of your head lol) my steve. I have trouble even looking at baseball. I remember how excited he got when I landed the gm interview. I miss him. I've cried endlessly over him the last few days. He helped me out so much with Ty. Giving me the ear and strength to get thru it. He was one of the first people to look at him and not say something about how he looked. He says, "he looks just like you, gorgeous." Yes, h e could lie too. lol Ty is gorgeous but I'm hard on the eyes. I miss him. Alot.
My sister had a baby girl. I can't remember the name now. It was odd. All is well from what I hear. Altho no one informed me of anything.
I didn't realize how angry I was that Tyler was ill until her baby was born. I can't explain the feeling. I dont wish for her to have an unhealthy baby. I want her to have a healthy baby, but at the same time I dont understand how we came from the same gene pool and she got the break and I didn't. I dont want her to have a sick baby... i just want my Tyler to be healthy. I'm having one of those days of I dont think he will ever make it through this with health.
I bailed on easter. I dont think we could take seeing a healthy baby or have to worry about all the people and all the germs, work, putting on a fake smile. I dont have the strength to pretend i'm positive and "oh we'll get thru it" "there is a reason for everything blah blah. the usual stuff I say in hopes it will keep me going.
Well, it has been one heck of a day here. I've been packing stuff up. They found bacteria in our carpet so we have to get new. Carpetland worked with us due to our situation and helped us out some, but now our car is crap. The drives to IC are too hard on a car. Anyway, so I have to clear out two of our biggest rooms and the whole upstairs. I'm tired. so tired. i love my kids but I'm having trouble getting the energy to even get up in the morning.
luv u boys
momma
- posted by Peg Kay @ 17.3.05

 
Well, Tyler was in Iowa City Monday. We talked to the dietician, She doesn't help much because we already do what she tells us and anyone who has been on a diet (which I have so many times) has all the information a dietician gives. He is on the low end of taking in all his calories on his own. But between GVH, diarrhea, and his disease in general he is not absorbing or is requiring extra calorie intake to keep himself going. Why he is not gaining weight and still requires CVN.
We also seen the G tube and what it would look like etc. Let me just say everything the doctors told us about this was wrong. It is not flush with the skin, it does stick out and it falls out. She says if it falls out just stick something in it like a straw or something. My eyes must have been huge because the nurse laughed out loud and made a comment about how I should see my eyes popping out. Anyway, this tube is longer than his leg she says just tuck it in his diaper. LOL with his stools? What a mess. They would cut open his tummy or put it down his throat (this is not fun folks I seen him have a throat scope and it is not pleasant. I will never NEVER allow that to happen again unless it is life and death) Here I thought I was gonna have to be the difficult b(*&^% again but then I looked over at Bob, my loving husband again, and LOL I didn't have a chance because he said there is no way in hell we are putting that in him. I said I tried to tell you Bob. The nurse didn't want us to do it either. BUT we listened and had an open mind so the doctors or PA can't call us difficult and uneducated. lol Well, they can and will but...
Let's see, he may have to have an endoscopy. I hope Steve knew I wont give permission for a biopsy but only the endoscopy itself. Last time he bled so much afterwards. He don't need that. Anyway, the reason for this is his stools have been pure water and green and up to seven or eight times a day. Dr. G recommended a steroid bolust and I don't think this has helped so much. If anything it has made him icky which steroids can do. He has also had trouble puking, but we think that is oral steroid related. We switched from IV to oral and the taste is bitter and icky and he will literally put his fist in his mouth to puke it up. So we asked for a pill form and we dissolve it in water cuz it doesn't seem to taste so bitter. and it worked. He took it well and no puking. Some of his puking may be due to his congestion. He has so much snot and mucus in him. It is unbelievable.
They made an appt with PT next week. Altho he has started crawling they wanted to get their take on it. We humored them but I don't take anything PT says serious because he is a baby and whatever pt can be done with a child is already being done and more. I did this with Dylan and the guy came and the first words, "I don't know how much a child his age will get from this, basically you do all that can be done so keep doing it." Ok I paid him 700.00 to tell me that? Ok, lesson learned. lol I will listen next Monday but I will not get suckered into paying money for something I know how and can do by myself. Besides, TyTy will not walk until them steroids come off. He is a 15 pound baby who shakes constantly due to meds. It aint happening. BUT I do keep all exremities moving as I should. He has learned how to play catch, stack things, place objects into given openings, he is all over the place moving, crawling, rolling. I have taken what I learned with Dylan showed the older boys how to do it and we all work with him. Less infection risk, (around people he already is on a daily basis nobody new) more comfortable, and it is free! You know babies, they can do things but then you get them in front of people and they wont do it. Now an adult you could say walk here, or go to the end of the rope, or push and pull your legs, with a baby it's move your legs, snot blows out their nose and they laugh at you because inside they know entertainment is coming in watching you try to get them to move. PASS. lol
They were overall pleased with how his skin looked wished his stomach was doing better. Dr. G wanted reglan but as Steve and I talked (Yes, we talked in a civil manner, scary huh?) how was I to tell if his stools were calmed down from the steroid bolust if we were giving him a med to make him poop? So we decided to wait and see if the stools got better and then if he was still puking I would administer the reglan.
I thought his bp's were so high last week? dang bp cuff. So we go to get a new one yesterday and we waited in the car for over an hour only to be given the wrong cuff. BUT Option care made a special trip out to bring us not only a new cuff but a new machine so it was ok. They are nice and good to work with. It has to be hard having this sick of a child who needs such specific needs. Because tho they are a medical supply most of their stuff comes from other people too. So if they can't get it they can't give it to us even though we need it. Now his bp's are a nice 90/40-50. Perfect!
He felt pretty icky yesterday in the morning of course but then come midnight he is still going and going and going. Mornings just stink for him. That congestion sits in there and just drowns him.
The car is going cappoey. Bob looked at a new 05 ford focus but he brought it home and not only did it have leather (three kids?) it was too small and to top it off it was yellow, I said eh uh take it back I would rather walk than ride in that yellow alien car. Plus payments were gonna be over 400.00. 400 fine but for that? no way. for 400 a month I want nice. lol Bob says I knew you wouldn't like it. THEN WHY DID YOU BRING IT HOME? he laughed.
Boys are having alot of trouble. Dylan told me he was mad at Brandon because he wasn't sick. Brandon is mad because Dylan gets attention because he was sick. They are saying this crying and I don't know what to do. I don't know how to even it all out. With TyTy I can't. I have to do what I need to keep him well, so if it means hours on end on the floor giving meds, temps, bp's, pt, I have to. I just don't know how to make my older boys know (even after telling them and going out of our way to show them) that we love them both. They fight over who sits where, who goes first, and it is more than just normal kid fighting, I mean Brandon will just cry because Dylan don't want to play with him. For Brandon things come easy, I understand this. I understand Dylan's view because I had it too. Like now everything comes easy for my sis, healthy baby, here you go. Everything just falls in her lap. That is how Dylan sees Brandon, he has a good personality and he just blends everywhere. Where as Dylan has to work so much harder to do and get what comes so easy to Brandon. BUT how do I make sure that I dont take away from either of them what they are meant to be. I can't hold Brando back, but I can't be insensitive to Dylan. Being a mother is the hardest job there is. People come down on stay at home moms, oh they are lazy, they dont want to work, but I would take mopping floors at a gas station or working on writing deadlines til the next morning rather then try to balance all of this only to fail. BUT they are my kids so I do it. I guess what my point was supposed to be is it isn't easy being an at home mom either.
Things will seem like they are falling in place but then everything falls apart.
I can't keep up with friends, or calls, or emails. I was so tired the other night Bob said he was talking to me and I just passed out. He said I was out cold. Wouldn't move, he said I scared him. I was just so tired. I have no energy to do anything. I'm amazed I wrote this.
Sis is due any day now probably today.
We were supposed to have easter here with the fam but Bob and I dont know if we can handle it all. Not only the mess but having it rubbed in our face that she can have healthy babies and we can't. It is just really hard knowing Ty could be living normally without pain. You see a healthy baby and you yearn for him to regain health so he can feel that way. Let him see what it is like to feel good enough to play without tiring or not having to choke down meds upon meds or being hooked to lines, or choking on snot because you are so swollen. I probably sound awful but I dont have the strength to be a liar right now. I try really hard to say that is her and I'm glad she is having a healthy boy and I AM but I want that for Ty. I try to be a good daughter, sis, mom, wife, but my heart is having trouble knowing that that she got the good genes and I got the bad ones and because of it my babies suffer. I wouldn't want hers to suffer either dont get me wrong I guess I sound bad no matter what. Why couldn't I had gotten good genes too? If I could only know that he would live through this and see a normal life....
I'm tired and have alot to do. I guess I better get it done instead of writing in here.
Days are scattered. Up one hour, scared the next, mad after that.... just force ourselves to get thru the day.
i love you boys
- posted by Peg Kay @ 16.3.05

 
Well, Tyler has been really picking up things. His motor control and his mental development are soaring. I think it is partly due to having the steroids so high and in turn calming the GVH which makes him feel so much better. He is just a performer. He was taking a syringe with his meds in it and putting it in his mouth like a cigarette. (tho he hasn't ever seen anyone smoke it is just an observation to describe it to everyone) He now gets up on all fours but I don't quite think he knows what to do after that. He plays catch with a ball and does real well with the hand movements. Tho he is 1 1/2 and most people take these things for granted but every thing he does big or small we are just so thrilled about. Today Brandon had a box Tyler wanted it so he rolled over the whole WHOLE frontroom to try and pull himself up to it. I was amazed. Altho most kids his age are walking and have been our son does what he can to move around and I'm proud of him. He shakes very much you can just see the damage the meds and treatment have done to him but he is so strong and it doesn't bother him. I see it in his eyes. I see his determination. Today, (that being the word) today, I feel that if his fight was enough to bring him to health I would have no doubt he would come through this. Unfortunately, there are so many factors that will, can, and do determine his fate. I seen his strength today.
Although he has been in such a great mood, his blood pressure has been thru the roof today even as high as 140 over 88. I contacted Dr. G and Steve and told them of the blood pressures and they went up to a higher Cap. dose but he still is on the high end which is to be expected due to his high dose of steroids. Just have to keep it under control. I find it so odd when we are in the hospital they freak over the BP. one point over and they are giving them doses and doses of BP meds but when we are home they are like Ehhh. I did email back and forth with the PA and that went well. We talked cordially to each other last appt. I went in with the best acting possible. I deserve an oscar. lol No bad feelings were present that day and I just smiled and answered his questions... in my head I was like you called me what? well you are a *^^%$%$@ lol I will put up with it why? Because, as much as some of us who have dealt with him dislike him as a person he is GOOD at his job and right now he is best for TyTy. He is not much on the personality side, and I don't think he cares a hoot about TyTy but he is thorough and knows about everything there is to know about TyTy even when he acts like he don't. The one thing helping me deal with him is I stopped caring what he thinks. Before... It is hard to explain he has pull with the doctors and when you are a mother of a critically ill child you do so much more than a normal mother does and it is stuff most people are trained for so I want to do a good job and if I don't he will be the one saying, oh he may need to stay longer mom can't or doesn't do well doing that at home. They need to know I can handle doing the things that need done with TyTy and I am so scared they wont think I'm competent enough to. He will decide that and relay it. It is his job. So I always worried what he thought. Now... Who cares. The doctors know me by now, and who is the PA? Will I see him once TyTy is better? no. Will I think of him? Hell NO! Why do I care if he thinks I'm uneducated, difficult, hard to deal with, irrational mother? I don't anymore. I think they know what I can and can't do by now without his opinion and if they don't they probably never will. Nuff time wasted on him. I would though really like to just have a conversation with him outside of all this. Just to see what he is really like. There has to be a man inside of all that stiff, workaholic, and uptight exterior. He interest me. Not in any manner other than just trying to figure him out.
The G tube... The endless debate and convo in this house. To do or not to do. Mama says NO. Steve wrote today in response to my email and seems for the first two months the tube will just hang out of his stomach. How do they think he wont play with this? He flips his C line as it is. My main concern he will not tolerate feeds and then we will have went thru surgery, risk of infection, for nothing. Other concerns that aren't real important but still bothersome. This is a 15 pound baby he already has a huge c line in his chest add another tube and his whole trunk will be covered in tubes, will he still try to crawl? Plus, and this is hard to admit as I say I will do anything for him as I will if this turns out to be what is needed, but ITS GROSS and I'm so scared I wont be able to take care of it. What if I am so scared to touch I don't clean it well enough and it gets infected, or I can't watch him 24 hrs and he pulls it out. What if he does? What if it gets infected? They keep saying we'll go to that and you wont have to get into his line. Yes, I will you still have to flush it everyday. Altho if he can tolerate the food it will eliminate cvn which is a big step but there will still be risk of line infections.
The sun was out and I took Ty to the window today his eyes were so big watching the outside. To think he has never seen that stuff. I'm having trouble dealing with the situation. I'm being selfish. I want him to be healthy and playing like kids his age do. Right now my heart is so sad for him and our family. I need to find something to get me back up again.
Anyway, I can't believe I wrote this much as I'm beat today.
The weight is piling on and I'm miserable feeling. We're so tired, the boys are just desperate for attention and I'm desperate to give it but I am so tired. I feel so worn down and all I want to do is sit around all day although with three kids even when you want to you don't get to.
It is late here so I better go. I'm so tired my eyes are fogging over.
His eyes, they are so beautiful. Tonight we ate frozen pizza lol and all went around the table and said something nice about each other. It was sweet what the kids said. Bob says tho our life is unstable due to Ty's illness we are doing something right. Though we have moved the beds all into the same room each night both kids end up in our bed with us. Little queen sized bed with five people in it. Bob says they still want to be with us and know we love them. We are doing something right.
I hope so. I don't feel like we are.
love you boys with all my heart
love momma
- posted by Peg Kay @ 9.3.05

 
People have been after me to write an update and there is alot to update but I am too tired. I'm sorry.
we are doing just what we need to do to survive.
I had a root canal and it was extensive so they gave me vicadin. What I realize as I take this is... I'm not supposed to feel so worn down, tired, miserable. You never know just how bad you feel until you feel good again.
Needless to say my Vic is all gone and I'm back to being tired and sad.
We're struggling to get thru everyday. Put on our fake smiles long enough to go see Ty's docs and see fam members for a few hours each week. Then we come home cry, worry, and hope that we still have all our kids by days end.
As much as we try to tell ourselves love is more than money it doesn't set well with bill collectors, and as much as we try to tell ourselves we will be happy with two years of Tyty we want more.
Every day he is here is a blessing but we are selfish and want more.
Ty is holding strong. He has been in a wonderful mood and is coming out of his shell altho there is extensive medical probs and alot of decisions to be made. we are trying to just hang on to him as long as we can and he has been so cute and wonderful to be around.
He is the one in pain yet he is the one keeping us smiling. He really is the glue to this family without him we will fall apart and scatter.
Life is not fair. Yeah I know no one said it was but no one said it was gonna be this hard and heartbreaking either.
- posted by Peg Kay @ 8.3.05